Stephen Crohn, a man who had a rare genetic defect that meant he couldn’t be infected with HIV and as a result was able to help medical science learn an untold amount about the virus, has died at the age of 66.
Crohn unfortunately took his own life on August 23, but it has taken until now for his family to go public with the news. It is, however, by no means cliche to say that Crohn’s legacy will live on.
Crohn was a gay man living in the midst of the rising AIDS crisis in the 1980s. People he knew, including his gymnast partner Jerry Green, were dying of a virus that was yet to be given a name. Through it all, though, Crohn remained untouched by this deadly disease.
As his lover and more and more of his friends died, Crohn began to wonder why it was that he was being spared? He had been just as sexually active as they had and, like them, had not used any barrier methods to prevent disease transmission. What was so special about him that he couldn’t contract this ravaging illness?
Crohn agreed to undergo medical tests to investigate why this might be. What scientists found was something that would eventually reveal the mechanics of HIV infection and help us stop those exposed to the virus from ultimately being infected.
Why Couldn’t Crohn Develop HIV?
In its simplest terms, HIV usually infects the body by fitting into receptors on what are known as the CD4 white blood cells. Once infected, the virus can replicate itself largely free from the tyranny of the body’s defense system. What scientists found was that Crohn had a rare genetic mutation, now known as the Delta 32 mutation, that prevented HIV from “locking” into those receptors.
A leading researcher at the time, Dr. Bill Paxton of the Aaron Diamond AIDS Research Center in New York, had been investigating men who appeared resistant to infection. Paxton sampled Chron’s cells and attempted to infect them. Even at concentrations thousands of times greater than real world infection, the CD4 cells that Crohn and men like him had supplied could not be infected.
This was something that, at the time, was unknown to science. It would later be found that just 1% of the population has this rare trait and it is predominantly found among those of northern European ancestry.
How Did This Discovery Help HIV Research?
Since that breakthrough, the medical insight gleaned by examining the so called Delta 32 mutation has led to a number of medical advances.
Chief among them include the maraviroc drug that is capable of blocking what is known as the CCR5 receptor. This inhibits HIV from replicating in the body once someone has been exposed to the virus and, with the help of aggressive retroviral treatments, can therefore prevent it taking hold.
The only man to ever be functionally cured of AIDS, known as the Berlin patient, was given a bone marrow transplant from someone with the same genetic mutation as Crohn. While the Berlin patient still has traces of HIV in his system, he has been off retrovirals for a number of years and has not shown any signs of adverse symptoms recurring.
Had Crohn and others like him not have been so forthcoming to help medical science — at a time when AIDS was thought of purely as a “gay disease” and gay people were treated as pariahs — these advances may not be as nuanced as they are today.
“This is a classic case of medical science learning from patients,” said Dr. Walker of the Ragon Institute, is quoted as saying. “Most of the immunology we know comes from studying other animal models,” he said. “We need to study humans who have real diseases. [...] What he contributed to medical knowledge is really quite extraordinary.”
Survivor’s Guilt and the AIDS Crisis
Crohn was by all current accounts a much valued social worker in New York, as well as being a successful painter and sculptor. He also worked as an editor for Fodor’s Travel, and had reportedly only recently moved from a Manhattan studio he’d had for many years to a home in Malden-on-Hudson.
Those closest to him confirmed his suicide last week. While no concrete reason has been given for what might have caused Mr. Crohn to take his own life, his sister’s comments about her brother’s guilt over surviving the AIDS crisis have sparked headlines that his surviving AIDS was in fact the cause.
The Independent would, some years after the discovery of Crohn’s genetic secret, dub Crohn “The Man Who Can’t Catch AIDS.” While true, some might falsely assume he could not be affected by the virus. He clearly had been affected, just not infected.
What is known as survivor’s guilt is unfortunately common in those who survived the AIDS crisis while those closest to them died. Michelangelo Signorile wrote a particularly illuminating piece about this, and about how those survivors can feel like they have been somewhat abandoned by the modern gay rights movement, over at the Huffington Post.
Regardless of whether the ultimate reason for Mr. Crohn’s suicide was survivor’s guilt or not, and it appears that is still of some debate, the mere mention of this awful psychological problem offers a rare opportunity for engagement and open dialog about what was, as Signorile describes, essentially a war between a generation of gay men and a silent killer they were abandoned to face and, what’s more, something which many survivors have little support in processing even today.
Image credit: Thinkstock.